3 boys, a handful of careers, lots and lots of pro bono work

Fragile Joy

I’m still thinking about it. I’ve begun to think about it more frequently recently. I do not want to spoil him. And yet what for other children may be a want, for him can so easily be a need. It may just be that our situation with LP is wearing on me. It may be that he needs help bumping up to the next level of development. I feel stuck & don’t want to turn around one day to discover that I have made too, too many accommodations to his special needs and learning styles. It would be so much easier for me if he were not – by temperament, nature & God’s crazy plan – a strong-willed child. But he is. He is very, very strong-willed and, no doubt, it helped him survive as a baby, but could we please turn it down a notch now that we are out of the woods?

This makes my job – and yes, from my last post and your comments it is becoming shockingly clear that this is my job, as no one else is going to do it – just so much harder. I am constantly diagnosing. Is he refusing to do something because he is afraid, because he is oppositional, because he is having a sensory overload, because he doesn’t understand? Or all of those?Breaking through the language barrier is sometimes more difficult that it ought to be with a four year old. His receptive language comprehension is low – 50% lower than typical for his age group. One gets the distinct impression that our two year old understands more. This is disheartening on many levels, to see him surpassed by someone half his age.

Once upset and oppositional, soothing LP and moving him past the meltdown is an absolute full-time occupation. No one else can talk to me (just try!), including other children, who instantly become anxious and needy when faced with the loud cries of a LP meltdown. I usually have to resort to threats that sound like “If you cannot stop screaming, we will go home.” “If you do not at least get one body part wet at swim lessons, there will be no ice cream for you when we leave.” “If you cannot obey mommy and put on your listening ears, you will have a timeout in the minivan while your brothers play on the playground.”

Mind you, this is just to get him to stop crying/screaming – at age 4. We have yet to address the issue that made him cry. Usually the issue is something or someone he feels he needs to control. His need to control the outside world can reach extreme levels when we are having an off day:

A. Food: “Thinker will not eat all the Os and honey. Do not eat all the Os and honey, Thinker.”“Little Bear does not want any pizza. He wants to stay in the minivan and take a nap.” (fear of other people finishing the food is very, very big right now. And LP is not actually a big eater. We normally have to beg/bribe him to finish his meals.

B. Sharing: He is just not good at it. He has very specific, rigid ideas about how to play with things. He usually has an elaborate thing going on in his mind and just freaks out when the truck he planned on using is not there waiting for him (b/c the two year old is playing with it.)He has a very low tolerance for accepting a substitute. He is very slow to change gears (“Honey, the swings are full, let’s go to the slide.”) He has the firm belief that the world is going to make a path for him & this just ain’t so. Nor would I have it be so.

C. Transitions: the more routine and scheduled life is the better. He fights transitions much, much less when they are repeat transitions – for example, going to school. Odd things like, we are going to the store now, or we have to leave the playground now, or it is time for cleaning up are much more difficult. Somethings are always difficult. For example we have been eating dinner every night for like forever now, but transitioning to mealtime is always rough. He negotiates every aspect of bath, story and bedtime & by that point of the day we are grouchy, exhausted and have lost our tolerance. Perhaps this is good or we might never get him to bed.

On the other hand, when in the right frame of mind, no one on this blessed earth can be sweeter. “All the flowers are blooming for you mommy.” “Here you go, Little Bear, you can have this car!” So bright, happy and proud of himself when he achieves that mysterious equilibrium in his body and with the world. It is this fragile, happy place that makes me weep because I’m so afraid of losing it forever.

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20 Responses

I could have written much of this, except for the language delays. I think a lot of what you describe is actually stubborn 4 year old, but I, too, wonder what is just how he is hard-wired and what is something I have to help him change. (He’s getting evaluated.) The scream-whine makes me CRAZY, by the way.

I could have written much of this, except for the language delays. I think a lot of what you describe is actually stubborn 4 year old, but I, too, wonder what is just how he is hard-wired and what is something I have to help him change. (He’s getting evaluated.) The scream-whine makes me CRAZY, by the way.

My son is almost 7 and we have constant battles that sound a lot like yours. I have noticed that he thrives on routine, too little sleep and we are in for a rough day. His diet is also a major issue for us, any artificial dyes, esp red 40, and he will be unreasonable for the day same with too much sugar. I haven’t read back very far in your blog so don’t know if you have experienced any of that. Hang in there, moms are their only constant, and you are right it is our job and our job alone.

My son is almost 7 and we have constant battles that sound a lot like yours. I have noticed that he thrives on routine, too little sleep and we are in for a rough day. His diet is also a major issue for us, any artificial dyes, esp red 40, and he will be unreasonable for the day same with too much sugar. I haven’t read back very far in your blog so don’t know if you have experienced any of that. Hang in there, moms are their only constant, and you are right it is our job and our job alone.

oh, hon. your road is a bumpy one right now. i’m not sure there ARE answers to these questions you pose. you can only do what you think is right in the moment and hope that it’s also what’s right in the long term.

oh, hon. your road is a bumpy one right now. i’m not sure there ARE answers to these questions you pose. you can only do what you think is right in the moment and hope that it’s also what’s right in the long term.

It’s a lonely place to know that you are the only one who really knows him in this way, knows how to make those distinctions, and has the history of knowing how things have worked for him in the past. That’s a lot for one person to carry. I do hope that as LP grows you will find more and more caring adults that understand how to walk that line with him as well.You are a wonderful mom.

It’s a lonely place to know that you are the only one who really knows him in this way, knows how to make those distinctions, and has the history of knowing how things have worked for him in the past. That’s a lot for one person to carry. I do hope that as LP grows you will find more and more caring adults that understand how to walk that line with him as well.You are a wonderful mom.

Right there with you. I often feel like I’m the only one who knows how to handle Cordy. Aaron is good at some of it, but I know all of the tricks. I sometimes wonder why Cordy has to be so strong-willed on top of her autism. I also go through the constant diagnosing, and the red-alert when trying to curb or lessen a full-out meltdown. Cordy has such a crazy need for control over everything. I know you’re doing the absolute best for your family. It’s so hard, but you’re doing an amazing job.

Right there with you. I often feel like I’m the only one who knows how to handle Cordy. Aaron is good at some of it, but I know all of the tricks. I sometimes wonder why Cordy has to be so strong-willed on top of her autism. I also go through the constant diagnosing, and the red-alert when trying to curb or lessen a full-out meltdown. Cordy has such a crazy need for control over everything. I know you’re doing the absolute best for your family. It’s so hard, but you’re doing an amazing job.

I’ve noticed that when we get to these places, or when I get to these places, the ones where I’m about boiling over with anxiety about some quirk or behavior, it is usually followed by some sort of little leap on her part. We are all so frustrated and then BAM she has a new skill and the anxiety tapers off. It is hard, though. There isn’t an easy answer unfortunately…but I wish there was!

I’ve noticed that when we get to these places, or when I get to these places, the ones where I’m about boiling over with anxiety about some quirk or behavior, it is usually followed by some sort of little leap on her part. We are all so frustrated and then BAM she has a new skill and the anxiety tapers off. It is hard, though. There isn’t an easy answer unfortunately…but I wish there was!